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Tuesday, 29 May 2012

On days like this I feel very glad that I'm not a health professional.

I strongly believe that people are entitled to the same quality of care, regardless of politics, social status or the cause of their condition. And yet I can't help feeling anger and frustration when I see people in hospital with me, apparently hell-bent on self destruction.

I can't help but think of the people I know who live so fully despite failing bodies - friends who have fought with everything to achieve their dreams in the face of unbelievable adversity. I think about the joy that these friends wring from every last little drop of life, despite knowing that life will be considerably shortened by illness, and the generosity with which they share their zest for living with those around them.

I can't help but think of the things that these people would do if they were given the opportunity to inhabit healthy bodies, like the ones that the people around me are destroying. It would be unfair of me to suggest that everyone should seek to change the world in big ways just because they have a strong and healthy body, but I wish that I could show these people how lucky they are.

I wish that I could make them appreciate the pleasures of eating good food in moderation, of having limbs that support their weight without pain; the satisfaction of a deep breath, and of the feeling of sun against bare skin. I wish that I could encourage them to make the most of every conversation; every sight and sound and touch and smell. I wish that I could give them some of the enthusiasm and love of life that so often comes to those of us that are constantly reminded of how short and precious life can be.

I resent the casual way in which some of my fellow patients treat their bodies, hardly seeming to care whether they live or die, and I feel angry that they've brought suffering on themselves by smoking and drinking and taking drugs and eating excessively, but most of all I feel sadness for them and all the things that they're missing.

Ferris Bueller got it just right when he said, "Life moves pretty fast. If you don't stop and look around once in a while you could miss it."

Sunday, 27 May 2012

Every so often the question arises about whether it's 'better' to have a visible illness or an invisible one.

Outward signs of illness can be really helpful to remind others of our limitations - my joints may be screaming in pain, I may be nauseous, dizzy and on the verge of fainting, but these things are all easily overlooked if people aren't suspicious and/or don't know me. Because I tend to smile a lot, even the doctors treating me can get quite a shock when my test results start to come back showing me as much sicker than they expected.

I don't like to tell people when I'm not feeling well. In fact, some of the time I don't even admit to myself that I'm not feeling well. Sometimes this backfires on me, meaning that I try to adjust and adjust and adjust my perception of 'my normal' until it's completely unavoidable.

Over the last couple of months I have spent more time in hospital than out of it. All of a sudden I have quite a lot of very visible signs that all is not right with my body. I have a permanent IV line sticking out of my chest, which is used to provide constant fluids, and through which I will shortly be receiving most of my nutrition. I'm waiting for a feeding tube into my small intestine, which will be used for small amounts of nutrition and some medications. My doctors have started to talk about the need to replace my manual wheelchair (which I only use part-time) with an electric wheelchair.

It would be very easy to think of this as reflecting a serious decline in my physical health. What I'm trying to do instead is be grateful that my body is now receiving the support it needs in order to function. I have been mostly housebound and constantly symptomatic for longer than I like to admit. I hope that these new interventions will improve my quality of life and allow me to get (and stay!) out of hospital.

Of course I'm still a bit scared of looking after the new tubes and handling new medications and processes. It will take time to adjust to the way my body now looks, and to having a constant companion in the form of a feeding pump to carry around with me. I still need to learn how to explain the changes to the people around me, and of course I'm still grieving for the loss of my ability to eat normally, and all the social changes that brings with it.

But essentially I'm still me! I might even be a more energetic and rosy-cheeked version of me once I get some decent nutrition. I'll certainly still be wearing lipstick, nail varnish and beautiful shoes. Most of all, though, I will be grateful for the continued opportunity to live this wonderful and precious life.

Tuesday, 22 May 2012

Life is a great adventure, but it's understandable to feel apprehensive about pain, other symptoms, disease progression and even death.

The problems really arise when the fear and apprehension become so all-encompassing that they eclipse all other feelings. Every day can hold so many fearful opportunities, and life loses some of its sparkle when we lose sight of the reasons it is worth living.

I know that I will probably die younger than most of my friends. I don't want to miss out on anything, but by focusing on my grief at having a shortened life expectancy, rather than on the opportunities in each day, that's exactly what I'm doing.

One of the ways that allows me to enjoy each day is to control my symptoms. By taking control of monitoring my conditions (even when this involves tedious blood testing or time-consuming calculations of fluid balance) and taking the right doses of the right medications at the right time, I am giving my body the best possible chance to perform when I want to do fun stuff.

Part of this relates to acceptance - acceptance is not just recognising the name and impact of your condition. On the other hand, it is also not about making illness (or recovery) the whole focus of your life. There has to be a balance between living with the condition and living despite the condition.

Fear is one of those things that can seriously get in the way of living a productive life despite illness.

For me, the first step is to recognise the things that make me anxious - there are almost always ways to get around these things, whether it's ringing ahead to a restaurant to discuss appropriate food choices to avoid anxiety on facing the menu, working with therapists to increase strength and range of movement, or discussing better pain management strategies with your Dream Team.

I'm scared of having long-term lines (IV and a feeding tube) - the responsibility of possible infection, the cosmetic implications (not that I've ever been a bikini girl!), the pain associated with insertion, and all the kit that I'll have to learn to use at home. I'm also scared that I can't deny the effects that this illness is having on my body - no more pretending that I'm perfectly healthy!

Thankfully, I don't have much of a choice in the matter of the tubes, so I'm just going to have to bite the bullet, put on my Big Girl Panties and deal with it. Focusing on the positives is going to be my strategy of choice - I'll be able to spend less time in hospital for a start! Obviously (because I love lists) I also have a list of fun things that I'd like to do once I have some calories inside me, and therefore some energy!

Am I still scared?

Yes, of course I am. Having a list of fun things to do and lots of lovely people to share these activities doesn't take away the reality of daily symptoms and possible future declines. What it does do, however, is remind me that however dark it may seem under my own personal grey cloud, if I make enough of an effort, there's always a silver lining to be found.

Sunday, 20 May 2012

A favourite quote of mine states that, "Courage doesn't always roar; sometimes courage is the small voice at the end of the day saying 'I will try again tomorrow'." (Mary Ann Radmacher).

This touches me deeply because it is so understated. Courage is often perceived as an active process, by which people act heroically in unimaginable circumstances, rushing through flames, or leaping from great heights without a second thought for personal safety.

My own personal variety of courage is always mingled with fear, and often with a sense that I would rather like to avoid any unpleasantness if at all possible.

Of course, living with the sort of illness that I have doesn't leave much room for the avoidance of pain or unpleasantness. Privacy, dignity and painlessness have all long been left by the wayside, along with vanity and the ability to plan for my future. I am learning, slowly and with the minimum of grace and courage, to breathe through the pain, to accept 'right' over 'pleasant' when necessary, and to appreciate the many, many things that make life wonderful despite the setbacks.

Courage stems from a belief that life is better than the alternative. Would I prefer not to spend time in hospital with the naked ladies who want to share my bed? Would I rather not have to be fed through a tube or have a large IV line in my neck for medications and fluids? Would I like to sleep through the times when my (many) medications are due, or rush out of the house for an adventure without packing any of the important medical kit?

Of course I'd like things to be easy, but focusing on the things I'd like to avoid means overlooking the many wonderful things that I still get to experience. The reason that I end each day quietly determined to try again tomorrow is because it's worth it.

About Me

Despite my best efforts, I still spend about 1/3 of my time in hospital (not including outpatient appointments). I have a genetic disorder that affects my joints, my digestive system, my autonomic nervous system (control of blood pressure, heart rate, temperature, and other 'automatic' functions) and hearing. I also have severe asthma. The combination of these things means that I'm almost always exhausted and in pain - this is how I live my life. There is no cure that will restore my quality of life to 'normal', so I have to find quality in what I have. I like things to be organised (makes life easier), love to be surrounded by beautiful things, enjoy knitting, reading and baking. As with all things, however, nothing is perfect, and we all make compromises as we try to make the best of what we have.